Immunotherapy Patient Stories

Bob Carlson

Area of Research: Lung Cancer

Lung Cancer

Bob’s Story

For Bob Carlson, 71, the standard treatment for his stage 4 lung cancer was almost worse than the disease itself. The 16 months of chemotherapy made him so sick he almost didn’t want to live. A search for better options eventually led him to Dr. Roy Herbst at Yale Cancer Center, who was conducting a clinical trial of a new immunotherapy drug called MPDL3280A. This drug, made by the biotech company Genentech, belongs to a class of immunotherapy drugs called checkpoint inhibitors; by “taking the brakes off” the immune system, the drug enables a more powerful attack against cancer. 

Bob started the immunotherapy trial in August 2013, and continues to do well today. The FDA has now approved the drug that was part of Bob’s trial. Bob and his wife Julia hope that the funding for research continues and that the efforts to share important research advances accelerate so that new treatments are available to more patients sooner.

Bob Carlson, Immunotherapy Patient: My first scan showed the tumors were shrinking. The doctor says 'Well that's good news.

Questions and Answers

CRI: How and when did you first learn you had cancer?
Bob: I had neck pain. This wasn’t uncommon for me, but it was particularly bad that day. So I went to the emergency room. They gave me a CT scan and they discovered a mass. I then went to a thoracic surgeon. He sent me for a biopsy and they determined it was lung cancer that had metastasized to my adrenal gland.

CRI: How did you learn about immunotherapy and why did you decide to do it?
BobAfter my local oncologist told me about my treatment options, I didn’t want surgery or radiation, so that left chemotherapy. After 16 months of chemotherapy, I was so sick I wasn’t sure I wanted to live any more.  Although the treatment they were giving me at the time was working, I was so messed up, I couldn’t even function. So my doctor took me off of it and said there was nothing left that he could do. He sent me to Yale and Dr. Herbst told me about immunotherapy and how it would retrain my T cells. I wasn’t ready to die so I did it.

CRI: What was treatment like? Did you have any side effects?
BobWhen I went down for the immunotherapy trial, I had to get EKGs, an ultrasound, an MRI, a PET scan, CT scan… I had to get all that stuff. The doctors and nurses were being really, really, really careful. They administered the drugs over a period of an hour and a half. I constantly had my nurse, Maria, coming in and checking on me, taking my blood pressure. Then, after I got done with the first treatment, they made me sit for an hour and a half. My first day there was eight hours. It was a long day. To the best of my knowledge, the only side effect I’ve had from this immunotherapy is, maybe one out of five visits, the next day I’ll have diarrhea. But I can’t even definitely attribute it to that.

After two treatments, they scanned me and they could see shrinkage. Then two more treatments and they scanned me again and they could see more shrinkage. It has now been six years since I was first diagnosed and the immunotherapy keeps the cancer in control.  I go every three weeks for my treatment and have 20 days in between to do what I want to do.

CRI: How did immunotherapy compare to other treatments you may have received, if any?
Bob:Immunotherapy differed a lot from the chemo. When you’re going to get chemo, you walk into the treatment room and they hang a couple bags and they plug you in and when it all drains out, you’re done.

CRI: What would you want another patient to know about immunotherapy or about participating in a clinical trial?
BobWell, everybody is different. I don’t know what everybody’s goal is. I don’t know how old they are. Like Dr. Herbst says, “This isn’t about a cure. It’s about treating cancer like diabetes.” You take your medicine, and you go on with your life. I have had to make zero lifestyle changes. Nothing. I feel great. I tell Dr. Herbst, I don’t even consider myself having cancer anymore, although I know I do.”

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